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The nightmare that is long Covid unfolds in many stages.

Long Covid collectively means symptoms that persist after Covid-19 infections have cleared, spanning both mental and physical health, the neurologic and psychiatric, cardiovascular and pulmonary, gastrointestinal and musculoskeletal. Within each organ system, severity spans a spectrum. In neurology, for example, that ranges from headache to encephalopathy to muscle weakness to “brain fog” that looks like dementia: memory gaps, trouble finding words, inability to do simple math, such as calculating a tip, or worse.

People can suffer months-long impairment even if their infection was never serious enough to require hospitalization. They’re short of breath, unable to sleep, to return to work, to live what used to be their normal life. We know all this thanks in large part to patient groups raising their voices, on social media and elsewhere, to draw attention to symptoms that would not go away.

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Lauren Nichols, vice president of Body Politic, a group formed to destigmatize issues facing people with long Covid and other chronic illnesses, recently recounted her 20 months as a patient and patient advocate at the 2021 STAT Summit.

First, there’s the infection itself, which for her meant not only dealing with illness but also fighting to be tested in March 2020. Previously a healthy, active 32-year-old who walked 6 miles to and from work each day, she was denied once, but then after her second attempt, she tested positive for acute Covid-19 infection.

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Then came the medical gaslighting, when her catalog of symptoms was not taken seriously by a series of clinicians: debilitating fatigue, painful lower esophagus burning, chest pain, shortness of breath, fever, night sweats, loss of taste, loss of appetite, and headaches and migraines.

“It was incredibly difficult because we were not believed. It’s one thing to have the physical pain, but it’s another to have those pains dismissed because someone has made up their mind that that’s not real, that that’s not attributed to Covid,” she said. “That hurt worse.”

During the first four months of her illness, frightening neurological symptoms also emerged. “I forgot how to use a toothbrush,” she said. “There were times where I looked at my hands and I couldn’t tell you what they were, I didn’t know what these things were called.”

She began posting her concerns on Instagram in March 2020, frustrated by how little recognition of long Covid existed in health care systems or government institutions.

Then came the death threats.

“As a result of that advocacy I began getting death threats. I was told that I was a paid actor by the government. I was told that I was an attention-seeking you-know-what and I was told that everything I was saying was made up and that I couldn’t be that ill if I was able to speak to the news,” she said. “You’re trying to help these very people that are wishing you ill at a time when you are just trying to survive and using the very little energy you have to help others not be in your shoes.”

The vitriol hurled her way sent her into a period of suicidality that she has battled throughout her illness. Now, while recognition has grown and research into long Covid is gathering steam, she said patients are not as central as they should be to the discussion.

“We’re still prioritizing the medical voice over the patient voice. And you have to have both,” she said. “That’s where medical innovation can occur. But right now, it’s not happening that way and that’s been a bit of a challenge for us.”

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